Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

kayak4me | @kayak4me | Jan 27, 2020

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

My name is Laurie and I was diagnosed almost 2 years ago with SMZL after routine bloodwork for an ortho procedure. I wasn’t officially diagnosed until after a bone marrow biopsy. I am extremely lucky to have been diagnosed early, and quarterly bloodwork find me remaining pretty stable. I am 64 years old and fairly active.

Has anyone seen or heard about healthy lifestyle models for SMZL patients? There isn’t a lot of research because we’re so rare, but I’d like to be as proactive as possible and find resources on diet, exercise, and mindfulness as it pertains to the immune system. So happy to have found a current group!

waltera | @waltera | Jan 26, 2020

In reply to @JustinMcClanahan "Hello @waltera. You may notice I moved your discussion and combined it with a discussion of..." + (show)

Justin, I think you’re doing a great job. Yes, it has spread to the lung area. I was treated with rituximab but it appears that it has returned based on a PET scan. I have frequent blood work as a monitor. I’m 84 years old and very fortunate I have no symptoms but I’ll probably try some form of treatment again this summer.

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 19, 2020

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

Hello @waltera. You may notice I moved your discussion and combined it with a discussion of the same title. In this discussion, you can read @scsimpson's experience. I'd also like to invite @andilynn, @grand4, @bordercolliecra to this discussion to share their experiences with splenic lymphoma.

@waltera, has your cancer spread to this area or is this something that is suspected?

waltera | @waltera | Jan 19, 2020

In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)

Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

SteveSmzl | @scsimpson | Feb 14, 2019

In reply to @caroldk "Thank you so much for sharing with me what's going on with you. I had pain..." + (show)

@caroldk I also am JAK2 negative & CD20 negative. Please don't feel alone there are a lot of great people here that you can always communicate with. As far as for SMZL it is slow growing and people live a good and long life with it. As for Mayo I can't recommend it enough. I am been to Rochester 3 times in the past two years and it has always been a great experience. Best wishes for you.

Steve

caroldk | @caroldk | Feb 14, 2019

In reply to @scsimpson "@caroldk I also have SMZL I was diagnosed in April of 2017 at Mayo Rochester. In..." + (show)

Thank you so much for sharing with me what's going on with you. I had pain in my stomach and I was anemic so a Ct scan was done. My spleen was enlarged so I was sent to see an Oncologist. He ran a JAK 2 blood test and he said if it came back negative that he would do a bone marrow biopsy. It came back negative so he did the biopsy and it showed SMZL. This is so new to me and because it's so rare, I feel alone with it. I'm not sure I like my Oncologist either so that doesn't help.

caroldk | @caroldk | Feb 14, 2019

In reply to @travelgirl "@caroldk are you able to get a second opinion from Mayo Clinic. They have a HUGE..." + (show)

Thank you Jackie. I would love to go to the Mayo clinic. I will check into it. Thank you so much for your advice. Happy Valentines Day to you also. Prayers for you at well.

SteveSmzl | @scsimpson | Feb 14, 2019

In reply to @caroldk "Hi Jackie, I was experiencing some of the symptoms prior to the iron infusions. I had..." + (show)

@caroldk I also have SMZL I was diagnosed in April of 2017 at Mayo Rochester. In July 2017 I had my spleen removed at Mayo. I went back home, then in September 2017 I had another bone marrow biopsy that showed that I still had lymphoma in the marrow. So I went on 4 weeks of Rituxan. I have the same problems as you do with fatigue, random pain in joints and muscles. My temps can range by up to 3 degrees from morning to night. If you have any questions just ask. If you don't mind sharing how did you receive the diagnoses of SMZL? Good luck to you.

Jackie, Alumna Mentor | @travelgirl | Feb 14, 2019

In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)

@caroldk are you able to get a second opinion from Mayo Clinic. They have a HUGE building and wing they just built in Jacksonville. Fl. They have all kinds of studies going on specifically geared towards Lymphoma. Can you reach out to them for a consultation? They also have facilities in Phoenix and Rochester, Mn. Maybe one of the Dr's there can help you? Or they have a study you can get in that maybe of benefit to you?

Does soaking in a warm bath help your symptoms at all? Or maybe applying some Ben Gay to the sore spots?

I wish you the best.
Please keep us posted, but do call your DR and see if he can give you some answers and help to alleviate your symptoms.

Praying you get relief..
And I hope you have a Nice Valentine Day..
Jackie

caroldk | @caroldk | Feb 14, 2019

In reply to @travelgirl "@caroldk I see you are new to connect welcome. Although I do not have the same..." + (show)

Hi Jackie, I was experiencing some of the symptoms prior to the iron infusions. I had fatigue and pain but it's gotten worse but I didn't run a fever. My Lymphoma is very rare, and I heard that some Oncologists don't know a lot about it. I will keep you updated as to what he says.

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